Working hard not to be defined by the thing that most defines me….

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Monthly Archives: February 2014

Looking back over the past 6 months of blogging – can you believe that!! I’ve managed to bore you proper for 6 whole months!! I’ve realised that my last few posts were not really related to the whole heart business…. (no pun intended, honest). So I’m thinking I should redress that a bit.

So… Here’s a bit of information about the stuff they don’t tell you when they’re patching up your holey heart, this is purely subjective on my part, these things happened to me and will not necessarily happen to anyone else who has the same defects as me.

When you have Open Heart Surgery, as the title suggests, your heart is literally opened. To access the heart you chest is cut open and your sternum sawn in two and held apart by rather large vice grips, much larger versions of what you would find in a woodwork shop. The heart is stopped from beating and the heart/lung bypass machine kicks in to do the blood circulating for you and the ventilator takes care of your lungs and breathes for you. The pericardium, the sac surrounding and protecting the heart is cut open and then the surgery begins on your now still and technically dead heart.

So this has happened to me three times.

Apart from the obvious fat flat scar running down my chest and the fact that I was prone to chest infections and colds as a little girl, there was little wrong with me, apart from a fierce independence (I would just take myself off on walks along the back of the block of terraces that we lived in at the time and make friends with any adult who happened to give me the time of day). That was also coupled and contradicted with a massive anxiety not to be left alone when I was ill – man, can you blame me, after OHS??

Oh yeah, I also had all of my top teeth removed as they went bad after a lot of sugary antibiotics and nothing to do with bad oral health! So from the age of 3 till my second teeth kicked in (wonky and not all at the same time), I would greet you with a gummy grin! Lovely! (Am I painting a picture of delightful-ness of me as a little girl – think of that along with the lovely homemade 70’s outfits I was dressed in…).

Even with my second operation, at age 7, things were not too bad. Yes, I had a god almighty shock when I was allowed to look in the mirror for the first time, my nice flat fat scar had been replaced with an angry, longer, thinner, raised and red scar with black scab sitting on the top of it under my neck. The thread of the black spidery stitches that was poking through the wound dressing at the top of my thigh were an indication that something hadn’t gone quite right with the attaching/removal of the heart lung bypass (which was done through the artery running through your groin when you were a child) left me feeling anxious – but that is another story I may tell you – the day they took those stitches out of that wound.

The biggest change from my second operation was the fact that I was stopped from doing PE at school at the age of 9. Up until that point, I had been managing my ‘condition’ very well, I had no idea that I would need another operation until rumblings of rumours appeared in my early teens. As far as I was concerned as long as I didn’t over-tire or over-exert myself, all was cool and I could do what I liked, until I crossed the path of a middle school PE teacher who in one-act of total disempowerment, robbed me of the confidence of managing my own condition. So there it was, I was stopped from doing PE, something that would stay with me until I moved up to the 6th form of my comprehensive where nobody did PE and I didn’t stick out as the weird one.

I had my last OHS at 16, this was the troublesome one. It was a major inconvenience on my part, to have my dad read me my O-Level results, out to me down the phone while I was in hospital, (B for Drama – Yay! C for English – Yay! A fail for Maths…. well, we knew that one was coming….) My only aim was to get in and out as quick as possible, I was dancing in a show in October I would need be back at rehearsals by September at the latest….. This time during my stay in hospital I was more aware of what was going on around me and I went into full on entertainer mode, I had a quip and a joke for everyone, I had taught myself to read the charts at the bottom of my bed, and the print outs of the ECG machine, looking back I can see it was a coping mechanism, behind it I was very frightened, I remember a few sleepless nights fretting about not waking up after the op. Sometimes, in the nights before the surgery, I would get up and wander about the wards and corridors for a bit, there’s something expectant about a hospital ward at night, it’s like it’s not really real, everyone is sleeping but everyone is waiting in that sleep, waiting for something to happen, to feel well again, for a new heart, to stop being sick, to leave…

Anyway there were no hitches with the surgery itself, in fact it went better than planned and the valve was saved and not replaced, (you can read about what was done here) the only hitch was that I was not transfused with enough blood after the op and had to experience a blood transfusion through the night, 48 hours after leaving the Intensive Care ward – a very interesting and shouty experience!

When I was finally discharged I remember very proudly walking out of the hospital in the tiniest of shorts, a top I’d made from sewing four dish cloths together and…… ahem…. to my shame…. a pair of white stilettos……. C’mon it WAS the 80’s don’t you know….!!!

So you may be thinking… what are the secondaries…..??? Well they didn’t turn up until much, much later….

I was 22 when my boyfriend at the time told me. “You’ve got a curve in your spine, it’s amazing.” SORRY WHAT????? A few crazy postures with a hand mirror and a wall mounted mirror later I felt that awful feeling of dread that he was right. I went to my doctor, and it was true, it was so clear to see and suddenly everything clicked into place. The awful spasms of pain that would hit my back and render me helpless and breathless on the bathroom floor, a feeling that my diaphragm was being crushed, that someone had put a steel band around my solar plexus and was pulling it tighter and tighter, the weakness I felt in my left arm and of course why some clothes looked bloody awful on me now matter how straight I held myself, I realise now that I was actually not standing straight at all but curving into a sort of odd ‘s’ shape. (I still do this now, and often catch myself with my hip jutting out, or leaning over to the right when sitting). My curve (scoliosis) looks like this:

Wish my bottom looked as peachy as hers… 😉

It’s not as bad as this picture, but it was noticeable! I started paying for remedial massage to soften the humpy backness I had and to try to bring my shoulder blades into some sort of alignment, I also went back to the hospital to see if anything was related to my last operation as it was also noted that my collar bones were (and still are) so out of line it was unbelievable. At first the hospital denied any involvement stating that Scoliosis could appear at any age and it was something I probably always had, it wasn’t until X-rays were compared of my chest before and after the operation that they admitted that maybe they hadn’t closed my ribcage properly and it had somehow slipped pulling everything out of kilter and also as it had been left for so long, two of my vertebrae had fused together. I would be 2″ taller if this hadn’t had happened. (Just imagine, I’d be 5’9 1/2″ – supermodel material 😉 and this is why I always think I’m taller than I actually am – that’s my excuse anyway…) They gave me a course of physiotherapy, and it wasn’t until my physiotherapist in Devon (I had moved to Devon at this point to study for a degree), who had also gone through open heart surgery, told me that it was the fact that I had been laid out badly after the operation and this was a common problem that they were beginning to see in people who had gone through OHS. Again things clicked in place, for a few months after my third surgery, I could not without considerable pain in my neck and back turn my head to the left, but after a few months this stopped being such a problem. I’m only now just wondering if this was the start of my spine and rib cage being pulled into its new curvy position.

And it goes on! Last year I was so very close to enrolling and spending almost all of my redundancy money in an intensive 5 week course in London for people with Scoliosis. I was getting frustrated with not being able to sing anymore, my breath control was diabolical, I really noticed it when acting and dancing, I couldn’t project as well as I could, I felt I couldn’t get enough air into my lungs, at first I thought it was heart related, at second I thought it could be Scoliosis related….. A fellow bellydancer has a scoliosis, hers is different to mine, but she very kindly passed on to me the details of her physiotherapist and I booked an appointment.

I met with the physiotherapist and gave her a brief history of (briefer than what is written above!!) my heart ‘condition‘ (condition, really, it makes me sound like a pregnant woman from the 60’s…) and the first thing she did was measure how much my ribcage expanded when I breathed in…… Shockingly and very surprisingly it expands not even half of what a grown adults ribcage should expand!! I was gob smacked. Armed with this piece of information I talked to my cardiologist about it at our next appointment. She “hmmmed” and then said…. “But of course, anyone who has had open heart surgery will have a rib cage that doesn’t expand as much as ‘normal‘ person’s does, it’s a side effect of the surgery, of having your rib cage open and closed!” She also went on to tell me that as my chest had been open and closed so many times my lungs were naturally smaller than someone’s who hadn’t had their chest cavity excavated. I was gobsmacked…. When was this discovered and when was I going to be told this??? If this was a well-known fact, why didn’t anybody tell me?? Y’know if they had told me, I may have kept up the voice classes and workshops I used to attend, because looking back, I think that was the only thing that kept me breathing, that kept my rib cage expanding as much as it did, that kept me ticking over, and the fact that when I was doing all this regularly, I bloody marvel at how GOOD my projection was, how good my voice control was for someone who had a half the lung capacity of everyone else…… bugger…..

So at the age of 44 years I discovered that having OHS can shorten your lung capacity, give you tiny lungs and shorten your rib cage expansion….. funny how you learn something new about your heart condition as you get older….

But it’s not just the physical things that are secondary to the main Open Heart Surgery thing, it’s the scars, the tests they do before they decide to operate, the angiograms, the exercise tests, the MRI scans, having radioactive dye shot through your veins, the trooping forwards and back from the hospital, the waiting, the lost notes, the realisation that you’re responsible for other people, that getting better or worse effects them and how to deal with that and all the other emotional stuff that I’m leaving out of this post, the dealing with the fact that you’ve consented for your body to be put through the equivalent of a high-speed road traffic accident and that you’ve been technically ‘dead’ three times in your life makes the film ‘Flatliners’ all the more laughable….

You may know who you are, and if you do, that’s fab! You may not know who you are and that’s also fab, think of the fun you’ll have finding out who you actually are.

If someone were to tell you, even if you think you know who you are, that you’re going to go on a journey to find the centre, the essence of you, would you take them up on their offer? Would you get excited about what you may find there? Do you think it will compound already what you feel about yourself? Would you be scared? Would you be ready for the possibility of a long and fraught journey ahead…..?

Part of my training is to be in supervision. I go to see a more experienced, seasoned therapist and talk about what the course brings up for me, and/or anything else that may take my fancy. Basically I get to talk about me, a lot, for a good hour and when you do that regularly stuff that you don’t intend or never really knew was there comes up. (See it IS all about meeeee!!! 😉 )

It’s like a journey to the centre of the earth, a journey to the centre of you! What might you find there, hot molten lava spitting and bubbling or a kindly old man (or woman) who will welcome you like an old friend and make you a cup of tea with a slice of cake and congratulate you on your journey? It’s all very pretty at the centre of you, diamonds sparkle in the walls and beautiful music sighs through the archways as you’re sipping the best cup of tea ever…..but….. pretty it may be…… and maybe after a while of being there and exploring…… it’s all rather…..er….well…… a bit………boring……

So my journey to the centre of me takes its form in my supervision, that’s what I’ve been on, it’s what I continue to do, it’s a requirement of my course, and when I’m qualified a requirement of my job. Kinda look on it as personal development in my career as a counsellor. To say what I found at my centre was a disappointment is a bit of an understatement. The words, clingy, dark, weak, frightened, and rubbish were bouncing off the walls and there was a lot, a lot of churning water….. Fucking traumatic if you really want to know. You kind of get lost in it, wading in the mire looking for a diamond….

But then if I think about it, do I want to be the most perfect, sparkling diamond and a bit cold, a bit boring having to keep up that diamond hard perfection or would I rather be the un-restful waters of imperfection, muddy, flowing, soft, a bit rubbish sometimes but with a lot of love to give.

I believe I have made my choice; it doesn’t sit well with me ‘cos I always thought I was a warrior, (with very shiny armour and a massive fuck off sword!) But at the moment, I’m a messy, emotional, chaotic, lazy, watery and a bit rubbish, at rest warrior and I’ve lost my armour and misplaced my sword.